Writer of YA, mainstream, and contemporary fiction. Shackled by RSIs. Published five stories anyway. Still writing. Admin at AlzAuthors, cross-blogging weekly to raise awareness of Alzheimer's and the dementias. Eclectic reader and book promoter. Follow my adventures in publishing.

Monday, November 30, 2015

Raise Your Voice About Alzheimer's

This is the last in a series of
guest posts about Alzheimer’s and caregiving as the #AlzAuthors Ending the Isolation of Alzheimer's campaign comes to a
close. Throughout November, I partnered with four other authors of books about
Alzheimer's to raise awareness of this horrific brain disease that affects 5.3
million Americans and each of their loved ones, and to honortheir caregivers, both paid and unpaid,
during Caregiver Appreciation Month. We also went on a crusade to increase
awareness of the importance of annual memory screenings during National Memory
Screening Week, November 1-7.

It has been a whirlwind 30 days
of blogging, sharing on Facebook and tweeting our messages to a worldwide
audience. With this last post I leave you with a message from Shannon
Wiersbitzky, author of What Flowers
Remember, a children's book that gently describes Alzheimer's. Shannon urges
us to keep the conversation going, to speak out about our concerns and
experiences, to let others know they are not alone in their Alzheimer’s
journey, and to demand that leaders in government, medical research, and
healthcare continue in their quest to find a cure.

Raise Your Voice About Alzheimer’s

by Shannon Wiersbitsky

Alzheimer’s is a disease that
steals memories. Robbing people, both old and in some cases, not so old, of
entire lifetimes. Of connections to friends and family, and of recollections of
the life experiences that serve to make them completely unique.

Too often, Alzheimer’s also
steals our voice. The disease is not spoken of much publicly. There is a
certain stigma associated with losing memories, a certain shame. Of course
there shouldn’t be. It is as uncontrollable as cancer, and yet a shroud of
silence surrounds it.

According to Dr. Jason Karlawish
at the Penn Memory Center, it typically takes one to two years to convince a
person with memory issues to come in for an assessment. Two years. There are
annual checkups for so many aspects of our health, why is the brain overlooked?

When I wrote What Flowers Remember, a middle grade novel about a young girl who
tries to save the memories of an elderly neighbor, I was shocked to learn that
it was one of only a handful of novels for children ages nine to thirteen that
dealt with the disease. Even more surprising were the conversations I began
having with friends. People I’d known for years who read the book and then
shared their experiences with the disease.

It was as if a secret password
had been spoken. I’ve been forgotten too.
And that was all we needed to kick start the dialogue.

This past June I attended a
community event at a theater company in my hometown. They hosted a talk about
memory loss and Alzheimer’s. The rain poured that day and yet the room was packed.
Caregivers young and old filled the seats, each one craving conversation and
understanding, some seeking resources or guidance, others simply wanting to see
in the eyes of those further along with the experience, that life does go on
eventually.

We need a different language for Alzheimer’s.
One where story and narrative help to drive a conversation. A free-flowing and
open dialogue about experiences, fears, joys and sorrows.

I have that kind of dialogue with
four authors I know. Each of us has experienced Alzheimer’s in a different way.
And each of us wrote a book, to help ourselves, and certainly in the hopes of
helping others.

Among the five of us, four have
been forgotten. Two by parents, one by a grandparent, one by patients. The fifth
is in the process of forgetting himself.

We meet regularly via video chat.
We share emails. We do all that we can to raise awareness of Alzheimer’s. To
shout about it from the heights of whatever soapbox we can manage to climb.

Jean Lee lost both her parents to
Alzheimer’s. She wrote her memoir Alzheimer’s
Daughter because it was what she needed to read. The story spans nearly a
decade, from daughter Rosie’s first suspicions that something is awry to nearly
a decade later as her parents, Ed and Ibby, draw their last breaths.

Marianne Sciucco, a writer who
happens to be a nurse, was inspired to write her novel Blue Hydrangeas based on the many experiences she had with families
facing the decline of their loved ones with Alzheimer’s and wanting to preserve
both their dignity and well-being.

Vicki Tapia also faced the
struggle of caring for two ailing parents. Her mother was diagnosed with
Alzheimer’s, followed closely by her father with Parkinson’s related dementia. Her
memoir Somebody Stole My Iron offers
a glimpse into the ups and downs of life with memory loss and provides readers
useful information and tips for coping.

Greg O’Brien was diagnosed with
early-onset Alzheimer’s. On Pluto: Inside
the Mind of Alzheimer’s is a book about living with Alzheimer’s, not dying
with it. Acting on long-term memory and skill coupled with well-developed
journalistic grit, O’Brien decided to tackle the disease and his imminent
decline by writing frankly about the journey.

I lost my Grandfather when I was
in my early thirties. And he lost me. I’ve written about it before.And I keep writing about it. Why? Because it
is impossible to understand how someone you love, who loves you so much in
return, can forget you.

Reading helps. Talking helps.
Community helps.

Through all of those things we
begin to heal. We laugh and cry, realizing that we aren’t the only one who has
experienced the pain. Our conversations put an end to the isolation and stigma
that Alzheimer’s can bring.

So let this November be the month
we began to share. Let’s continue to create that new language. Together, our
voices can stamp out the stigma of Alzheimer’s. I can’t wait to hear the
chorus.

To learn more about the #AlzAuthors and their books please visit our web page.